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Hi , well, I was hugely hypersomnic (is that a word?) when I first got

ME 20 years ago, and it has gradually changed over time, to now, when I

hardly ever even nap (though I spend lotsa time horizontal, goodness knows!)

My understanding is that sleeping 18 hrs a day is more a feature of early

stage.and hey, if you can sleep now, it may improve your chances of

recovery! How long have you been ill? Anyway, take care and sleep well!

Aylwin

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OH NO, ...........I was hypersomniac in the beginning of this disease. I

am still exhausted most days, but it has now turned into sporadic insomnia. I

know, wierd isn't it? I sure never thought I'd have problems sleeping, since

that is all I FEEL like doing. But I can go days without any sleep at night,

just zombie-like, not really awake, and not really asleep, just a sort of limbo.

Used to really piss off my husband when he would see how exhausted I was during

the day, accomplishing NOTHING at home, and yet, awake most of the night too.

But, I have found, to my comfort, that I am not the only one. Just a different

stage of the disease I suppose. Hang in there...........I think everyone has

had it at some point. Know we are all here with a compassionate ear............

Take good care now,

STL Jane

~ ~ wrote: Am I

one of the few who has hypersomnia, not insomnia? I feel like I'm

the only one... ?

\

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> Am I one of the few who has hypersomnia, not insomnia? I feel like

I'm the only one... ?

Hi ,

By " hypersomnia " do you mean sleeping about 20 hours a day? If so,

that's where I was 3 years ago. And you are definitely NOT the only one!

I also have Multiple Chemical Sensitivities which back then I

preferred to call Environmental Sensitivities because you name it, I

reacted to it...grass, milk, potatoes, wood, polyester, eggs,

pesticides, perfumes, cleansers, soaps...well, you get the

picture...everything! I have cleared my sensitivities to many of the

foods and the outdoor things and now I can stay awake a normal day,

8:30 to 10:30.

But compared to what I used to be able to do in a day, I'm still

pretty sedentary. Or else I pay for it with the need to sleep more again.

I just wanted to let you know that you are not the only one who need

more sleep than we'd ever guess we could sleep in a week!

Debbie mcsbarrie

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Wow, I didn't even know hypersomnia was a word...but it sounds like me.

I usually get about 9 hours a night, still wake up exhausted and often

sleep through my alarm. All the things that well-meaning people have

suggested (no caffeine, excercise in hte morning, light dinner) have

done nothing--I always feel like I could use a nap. It's so annoying.

My father also needs to sleep a lot (he has clinical depression) and

has used provigil with a lot of success. I'm thinking of asking my new

doc about it.

Speaking of, I'm seeing a new doc...I like my old one, but I can't

afford him anymore and he's not coveed by insurance. I'm seeing a

doctor at NYU medical cetner, a rheumatologist. I'm also hoping she can

be my PCP...I couldn't get an appointment until April, but I'm hopeful

that it will work out...plus, even if i see her every week, i'll still

be saving 55 dollars a week (and hopefully get out of credit card

debt...)

sarah

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I have both...there are times when despite taking my ambien and tizaanidine I

will still stay awake and can do so for 3 days. It just kills me, I find that

my body feels as if it were body slammed by an 8 wheeler.

hypersomnia

Am I one of the few who has hypersomnia, not insomnia? I feel like I'm

the only one... ?

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Hi, all you hypersleepers and mininappers and everything in between, Well,

20 yrs ago when I got this, I slept as much as my situation would allow -

anytime I wasn't looking after my kids! I could easily have slept 18

hrs/day, and if I could have, who knows if I would be well today? Over the

years it has shifted, but until recently I never could make it through the

day without a nap. Now, I do not nap per se, unless I have a big crash,

though I spend at least 6-8 hrs semi-horizontal.so movies, short spells of

reading (can't read long or at the complexity level I'm used to, I've been

an avid reader since I was 3, so it is very strange to me.) sudoku, watching

the birds outside and the sky etc. For excitement I shift over to the 'puter

here and talk with you lot and others! If I had any advice, it would be to

let yourself sleep if you can, and stay in a restful state if not. ,

have you thought about switching around your med regime, try something else,

as the not-sleeping is so damaging, as you describe. It took me a lot of

twiddling to get it right, and I know it may change again on me. My ideal

amount is 9 hrs now, if I get that (with 1 wakeup), I'm doing well. Aylwin

I have both...there are times when despite taking my ambien and tizaanidine

I will still stay awake and can do so for 3 days. It just kills me, I find

that my body feels as if it were body slammed by an 8 wheeler.

..

<http://geo.yahoo.com/serv?s=97359714/grpId=7464409/grpspId=1705061682/msgId

=18668/stime=1173626601/nc1=4438966/nc2=3848445/nc3=4025308>

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